1. Introduction
Northumbria Healthcare NHS Foundation Trust locality believes that patient and carer (user) involvement is central to the development of Cancer, Oncology and Palliative care services within the locality (the term locality refers to the area of Northumberland and North Tyneside) The views of patients and carers are actively sought and acted upon by the organisation to develop services. Key guidelines such as The Cancer Strategy (2015), NHS Five Year Forward View (2014) – Cancer, NICE guidance for Improving Supportive and Palliative Care for adults with Cancer (2004) and The Cancer Plan (DH 2000) provides a framework for user involvement and to be empowered to be an equal throughout their cancer journey.
2. Purpose
- To provide a recognised forum within the locality to enable users to influence through consultation, the development, commissioning, delivery and evaluation of cancer, oncology and palliative care services
- To provide a communication channel to the Network Service User Partnership Group (NSUPG). Sharing views that reflect the broad spectrum of users within the Northumbria Locality.
- To provide opportunities for users to develop their knowledge and skills to allow direct involvement in influencing services.
3. Membership
- The group is open to any patient/ex patient or carer/friend or relative who has been affected by cancer and has received care within the locality, health and social care professionals and representatives from self-help/support groups. Proposed honorary members to be considered by the group on an individual basis.
- All members will be provided with a welcome pack.
- A member may change their level of involvement or give up their membership at any time.
- The majority of members are recruited by word of mouth.
4. Frequency of meetings
- The group will meet on a monthly basis from May to October and every 6/8 weeks from November to April, rotating between each of the following sites: North Tyneside General Hospital, Wansbeck General Hospital, Hexham General Hospital, Berwick Infirmary
- For a meeting to proceed five members must be present, patients/carers must represent the majority. Sub group meetings may have fewer members and this will be agreed by the sub group with the main group.
5. Expenses
- Patient/Carer members of the group can expect to be reimbursed for travel expenses (mileage/parking fees) to attend partnership meetings. Funding for attending Local/National events will be agreed on an individual basis.
6. Code of Conduct Ground rules
- Confidentiality – information discussed within the meeting will not be discussed outside the meeting unless agreed by the whole group.
- Respect – all members will respect individual’s views, giving time to speak and ensuring the focus is related to the agenda.
- Consultation as opposed to confrontation – the group will seek to work in partnership with hospital, G.P.’s and community staff to achieve development in service
7. Terms of reference
- To raise awareness about the importance of user involvement within the locality.
- The group is not a support group because its function is different.
- To be inclusive, to find ways to obtain a wide range of opinions of users of cancer and palliative care services, especially in under represented group (defined by age, social group, disability and ethnic background).
- To affect change and innovation in cancer and palliative care through partnership working.
- To provide a resource and contact point for health and social care professionals wanting to link with user in cancer and palliative care.
- To link closely with the North of England Cancer Network Service User Partnership Group and be aware of service developments across the NECN, to learn lessons and prevent duplication.
- To influence and assist organizations to implement The Cancer Strategy (2015), NHS Five Year Forward View (2014) – Cancer, The Cancer Plan (DH2000) and Improving Supportive and Palliative Care (NICE 2004) guidance.
- To report directly to the Cancer Strategy Group (Locality group).
- Cancer Services Team communication link – Macmillan Lead Cancer Nurse.
8. Areas of work
- The users will determine the areas of work and priority and supported through an agreed action plan. Potential areas could be identified from the “Talking about Cancer” event, patient surveys and or feedback from Patient Advice and Liaison Service (PALS) for example
- Group members will act as user representatives on the Network Service User Partnership Group and the Cancer Strategy Group. As a representative they will be expressing the opinion for the users of the Northumbria locality.
9. Roles of members
- The Chair
The chair will be a user or carer, elected by group members for the maximum period of one year terms. If there is a tie election result there may be two co chairs. When no chair is in place a temporary chair from the Northumbrian Locality will act as chair on a short term basis. The chairs responsibilities include: preparing the agenda for main group meetings, advising on issues relating to meetings, follow up of issues relating to relevant meetings and represent the group at the Cancer Strategy Group. - Users
Users bring experience, knowledge, skills and direct experience of cancer services and care. - Health and Social Care professionals
Professionals are a resource for the group and provide a mechanism, to feedback to respective organizations. Professionals may, at the request of the group, facilitate meetings in the absence of a nominated chair. - Review
The terms of reference will be reviewed on an annual basis.
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Author: CW;AW;JG;SB
Date: 22/8/2016
Review date: 22/8/2017